From My Journal Aug. 11, 2009

The last few days have marked the year anniversary of a series of bad news.  August 10-12 Bryan and I got repeated discouraging news that really changed the direction of our expectations for Samuel.  It was a year ago today that the doctors first told us they didn't think surgery would be an option, and Samuel ended up on the oscillator and a paralytic for the first time.  I just found a 10 second video from when Samuel was on the oscillator, and I'd forgotten how incredibly loud it was.  They were extremely hard days for us -- a time when our upbeat hope really started to turn into a continually gnawing fear.  We still had indescribable peace much of the time, but underneath it all there was the very real possibility that Samuel would die.  And I guess peace wouldn't be true peace if we were only peaceful because we thought God would do just what we wanted instead of trusting Him to be God and good no matter what.

Here is what I wrote in my journal on August 11, 2009:

"Samuel is still in the CICU at Egleston, and doctors still don't really know what's going on.  Yesterday was a very discouraging day.  Dr. Kirshbom and Dr. Videlefsky came to see us after the Cath Conference (14 doctors, 3 surgeons), and their news was disheartening.  They don't understand why Samuel is a as sick as he is.  Everything doesn't add up.  His lungs should be better than they are, and they are concerned about his liver.  Plus the heart issues he has don't seem to add up to the trouble he's having.  Dr. Kirshbom doesn't want to do surgery if he's not sure it will help Samuel -- and he's not sure it will.  He feels confident he can close the PDA which is shrinking (but slowly), and he thinks he can take care of the large fistula.  However, there are several small fistulae going to the left side of Samuel's heart, and he doesn't think he can do anything about those.  Mostly he's not convinced surgery will truly help Samuel.  This is heartbreaking news to me.  In the last 18 hours, I've come face-to-face with the reality that I very well may lose Samuel.  He may never get to come home, I may never get to feed him, he may never know his brothers, I may never have all 3 of my boys together.  It's been a dark time for me and terrifying.  I love little Samuel so much, and I don't know how I'll go forward if I lose him.  I know I won't have to walk that path alone, but it's a horrifying path I can hardly stand to ponder.

Last night I shut myself in our dark bathroom, sat on the side of the tub, and just bawled.  I wonder how we can survive this.  I know in my mind that God will carry us through whatever is ahead, and that whatever He asks, His grace will provide, but my heart feels so broken, and my hope is so thin and brittle.  Last night's info was hardly the final word, but it felt crushing.   

Grant me faith, Lord, trust and hope.  Grant me an utter dependence on You.  Help me cling to You, and help me honor You in this process.  Help my life to bring You glory.  Give me feet that are firm on Your foundation and a heart that sings Your praise in the darkness as well as the light.  Buoy me up on Your truth, goodness, faithfulness, and kindness.  Sustain me.  And do the same for Bryan.  Carry Caleb and Joel through these days.  Fill in our gaps.  Where we can't be enough for any of our sons, I know You can.  Grant them joy, peace, and security.  And encourage my mom.  Give her places to be broken and hurt.  Give her energy to keep the boys.  Help Bryan and I be able to love Caleb and Joel as they need it in this time.


And heal Samuel, Jesus.  Touch his heart and heal it.  Close the PDA, prevent a coarc from forming.  Fix the fistulae.  Heal his lungs and liver.  If there's something the doctors are missing, help them to find and see it.  Keep Samuel safe in the Cath. lab.  Grant Samuel a long and healthy life, and help us to trust him into Your care.  Carry us day by day.


I trust You, Lord, and I love You.  Help me to submit to You in all of this.  Amen."